Love your Diagnosis

Belle H talking about Stage IV Endometriosis

November 27, 2021 Lainie Chait Season 1 Episode 10
Love your Diagnosis
Belle H talking about Stage IV Endometriosis
Show Notes Transcript

In this Episode of Love your Diagnosis, I talk with Belle H about her diagnosis of Stage 4 Endometriosis.
Endometriosis is a common disorder that affects many women and can be joy altering due to the pain that is endured every month. The disorder is from the uterine lining growing outside of the uterus to ovaries, fallopian tubes and even intestines. OUCH!!!

Belle tells her story of having options to deal with the discomfort by taking the contraceptive pill which is the first point of call for many women. This avenue didn't help her though so she sucked it up for many decades and just surrendered to being in pain. Until she opted for a hysterectomy at 37 and her life has never been better.

A story of choice, tenacity and hope.


I do everything for this podcast with no financial backing why? because I think it's important to share people's stories and successes in order to empower everyone!!  If you would like to donate to the running of the podcast ad free I would be so grateful.

You can get my book here which is a raw and honest dialogue of how I went from completely using allopathic medicine to manage a diagnosis of epilepsy, to only using a small amount of medicine and managing the rest with lifestyle choices and other wonderful plant medicines and supplements

Also you can sign up to my quarterly newsletter below where tips and resources will be shared for you about different topics of wellness that you can  feel into and decide if they are right for you. Knowledge is power.

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A little side note:
These shows are meant to create food for thought for people going through similar situations. Planting seeds of information about things that perhaps you never knew could and might assist in treating and managing the symptoms associated with your diagnosis.

Alternative treatments are out there to be used, alongside allopathic medicine, or instead of.
That part is completely up to you, but gaining knowledge is the first part in empowering yourself back to health.

I really hope you get some good ol' nuggets of info from these interviews so you can go and start researching yourself and perhaps even start experimenting on the treatment that feels right for you instead of just letting someone else direct your health decisions.

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Lainie  0:00  
Welcome, Belle. It's a very special podcast because I met Belle through a #DJ course  that me and my business partner started. And she's just become a little bit endearing to my heart. So and she agreed to be on the show because she's a frickin legend.

Belle  0:17  
Thank you.

Lainie  0:18  
I know you're a little bit nervy about doing this. Have you ever spoken about what you're about to speak about today?

Belle  0:23  
Um, yes, I have not necessarily in a public forum. I think I  get a bit annoying talking about it. Because it was such a big thing that, you know, I'm a bit of a pest when I talk about it,. I've never been on a podcast before. So this is this is quite new, but hey, why not?

Lainie  0:41  
Okay, well, you're ready to jump straight in? Sure. Let's do it. Alright, well, then the reason you're here is to actually talk about what you've been diagnosed with. So give us a little bit of a brief overview, what you've been diagnosed with how long ago and a brief description of what it kind of is yes.

Belle  0:59  
Well, part of what I was going to talk about today is that what I'm talking about is in past tense, what I did have was stage four endometriosis. I remember when I was about age 12. And I think it was pretty early in my in puberty, being on the floor of my friend's bathroom, vomiting, and in excruciating pain because of my menstrual cycle and being like, What the hell is this? Is this experience? And that was pretty consistent for about 25 years, until I opted to have a hysterectomy when I was 38. Wow.

Lainie  1:38  
So did you menstruate? Like every 28 days with Endo 

Belle  1:43  
Yes It's pretty consistent, but it was for about three to four days of every month, I would be I would be in a lot of pain. Like I can't I don't know how it would measure on the pain scale. But it was awful, I often would pass out from pain as well.

Lainie  2:01  
So from 12 to 38, that is a very long time monthly to have to deal with something like that. So basically, firstly, does it come? Because I know that there are three ways that women get Endo, and I worked for a medical cannabis company. And I actually worked out myself that for some women, a lot of women that have endometriosis, a common theme is that they've been traumatised in their younger years. I put that together myself, just from the hundreds of women that I spoke to with it and always went to that thing. But other ways you can get it is that it's genetic, or that it's during birth, or that it that you've just been born with an abnormal uterus? Do you fall into any of those categories?

Belle  2:45  
I think I would say genetic because other members of my family also have endometriosis. So okay. Yeah, I, you know, I am interested in the mind body connection. And sometimes I've wondered about it.  I wouldn't identify someone who's had significant trauma, particularly not around my uterus or anything. So yeah, I don't know that. Yeah, I would say genetic. I feel it's pretty genetic.

Lainie  3:10  
Yeah. Okay. All because I guess it's in your family. Do you have sisters? 

Belle  3:14  
Yeah. I've got a sister. She's doing your DJ course

Lainie  3:17  
of course Cath! Yeah. Does she have it as well?

Belle  3:21  
Yes. She said I could mention that she does. So I'm talking with her consent. So yes, she does.

Lainie  3:26  
Thanks, Cath. So did your mum know immediately what it was that you were going through?

Belle  3:34  
I can't really remember what the conversations were about it. But I think so. Yeah, I remember. Like, there was always Naprogesic around the house, because that was meant to be the treat, you know, the painkiller for Endo, you just scoff a bunch of Naprogesic. So it was always sort of present in the house you know,but not discussed

Unknown Speaker  3:55  

Belle  3:56  
I think it was discussed. Not, you know, pass the, potatoes,  period kind of thing. But there was sort of, you know, I'd say open discussion about it. But I think too, there was sort of a, an acceptance. This is just how periods are. This is what people have. I remember my sister saying that once in her peer group, they said to her "cat, you have really painful periods", because we just sort of thought it was normal that when you were in period, it was like, you'd be in excruciating pain. And, you know, your life would suck for five days. So it was kind of just accepted.

Lainie  4:30  
You just sucked it up!?

Belle  4:31  
Yeah. A little bit. Yeah. Like not in, you know, I don't want to throw shade at my family, but it was sort of like, oh, this is how it is.

Lainie  4:38  
Okay. Wow, and that's really confusing. You know, for young teenagers, especially when your friends aren't experiencing it. And you're going through all this pain. And you know, I remember, as a teenager, we didn't really discuss it. I remember learning how to use a tampon. We were drunk and out somewhere and there was a friend in the cubicle next to me  just explaining how to put it in. So you know, and there were other people in the bathroom and she was just directing instructions at me going so you put it on your finger and then put it in is aimed towards your coccyx. So it just wasn't really discussed.

Belle  5:13  
Yeah, I read a lot of Dolly and Girlfriend magazines when I was a teenager because that's my vintage and they really did me such a service in educating me about my body and about sex and sexually transmitted diseases and contraception and consent. And I really took my hat to those magazines because you know, things like Dolly doctor and that, you know, you'll get access to information about you know, your menstrual cycle and your bodies and that, you know, I'd like this a lot of negativity about teen magazines. Well, there was not really a thing anymore. And I think both of them are out of publication but they really were great because you know, you weren't going to talk about it in PE class or whatever, because everyone would you know, take the piss

Lainie  6:02  
remember dolly doctor was brilliant, so good. I mean, they've got Frankie, the Frankie  is a magazine now, but I don't think they go into depth about the sexuality of things. Frankie's like fashion.

Belle  6:12  
and tea cozy's, it's is an apple tea cosy. I'm not knocking them out. I bloody love tea cosies. But that's what I think of with Frankie.

Lainie  6:21  
So when did you then as an individual decide that you just had enough with this pain and need to go and and look into it further.

Belle  6:31  
I remember being in a doctor's office and this fantastic doctor Dr. Hilary Stevenson in case she's listening and I remember she was the first one who broached that I might have endometriosis. I would have been somewhere between 13 and 14 I want to say, Ah, I remember she was the one who first sort of said, Oh, well, it might be you know, endometriosis. And I think I was put on the contraceptive pill for that. And I think some girls in my high school found out about it, and we're calling me a slut. Oh, look, I think high school was pretty horrific. It was one insult amongst many. So did it help? No. This is sort of why eventually I opted for the hysterectomy, which we'll probably talk about, but I had such a gnarly reaction to oral contraceptives, that it wasn't like once I took it and I had a period for a month. That would make me bonkers, like just not myself, like just feeling like I had like wild animals in my head. And just the side effects from the pill were just absolutely horrific. Even the smallest dose would just set me off to the races. So I tried every single one like Linda, Diane, you know, they'll sound like tennis Ladies, don't they? You know, and I tried all of them. And they just weren't going to work for me. And it just felt wrong taking it. And that could be my own psychosomatic response. But I used to vomit or it just felt he you know, like it wasn't meant to be there.

Lainie  8:01  
How long did you give it a go for though?

Belle  8:04  
I think I sort of stopped taking the pill probably my early 20s. I want to say I see gave it a crack. I did or sort of on and off like I would take it and then that wouldn't work. So I try something else. And then it was kind of on and off. 

Lainie  8:19  
 Had you lost your virginity in that time?

Belle  8:22  
What before I was in my 20s? Yeah,

Lainie  8:25  
before you got off the pill. So I know with a lot of ladies with endometriosis too. That can be quite painful. Did you experience that as a symptom?

Belle  8:34  
What kind during sex? Yeah, really? Nice. certain positions. Yeah. But not really. Because I know. That can be a big thing. Unfortunately, it wasn't really. Yeah.

Lainie  8:45  
Okay, maybe you needed bigger dicks? (laughing) So, so Okay, 21 you're still experiencing this? Did you go and suss it out deeper? Did you go down a deep rabbit hole with it and start Googling and finding out like other people in your situation. Or were you still kind of doing this solo and trying to nut it out,

Belle  9:05  
trying to nut it out. I just used to take so much ibuprofen. Fuck, this is the thing. I just sort of accepted that this was my life. Like, this is what you do. You know, like, I didn't really have a particular hunger to fix this. Because I'm like, Oh, this is just what you do. You know, you've got brown eyes, you've got long fingers, and you have a period pain once a month, you know, so I just sort of accepted that was my life in a way. I mean, I do remember, like, occasionally it would get really bad. And I would faint, and my co workers would sometimes have to take it to the hospital. And I was living in New York at the time where if you go to the emergency room, it's $150. Even if you have insurance. Yeah, that's a whole other conversation. So I remember always saying to my co workers  there's a chance that I might pass out. Don't worry, this is what's going on. Blah, blah, blah, blah, blah. And I had so many ultrasounds and stuff. And the interesting thing with endometriosis is that so I mentioned that the doctor said it might be endometriosis, the only way that they can conclusively diagnose endo was through a laparoscopy surgery because ultrasounds sometimes don't pick up Endo. I had a tiny dot show up on an ultrasound done in 2014. And the doctor said might be endo might not be we don't really know that just based on your symptoms. Most doctors were like, Oh yeah, you probably go and are you know, it wasn't because it's reasonably common. It's not an obscure diagnosis, but it was only when they cut me open as part of my surgery that they were like, oh, yeah, you've done stage four, and it was absolutely everywhere.

Lainie  10:32  
But I'll take you back though, before it was decided that you've got to get it looked at closer. Was there any test done, or they just went now we've just got to go in.

Belle  10:41  
They usually opt to do the more conservative treatment measures first and usually that's the pill. Most people they go on the pill, they have no issues. Then the next step up is the Mirena IUD, which is also very successful in treating Endo, but I got a referral to an OB GYN. This was in Melbourne, and I said, I can't do it. I said what's OB GYN? That's a stupid American speak obstetrician gynaecologist school, and I said, I've had such bad reactions to artificial hormones. I just can't do it. You know, I've got a really emotionally intense job. I just can't risk going bonkers from Mirena IUD. And so he said, Well, there's some other options. One is called a laparoscopy where they can remove the endometrial lesions, often people who have that I've been able to get pregnant after that, but it does come back. The second option is I think it's called a endometrial ablation where they cauterise the lining of your uterus. So you absolutely cannot get pregnant after that. Were you wanting to get pregnant? That was a that was a bit complex, but not at this step. By the time I was in this gynaecologists office, I was very certain I didn't, I wasn't going to have children. And my partner at the time was on board with that too. And then he said, Oh, we could send you next door to women's hospital, and we can take it all out. And I was like, it was like, I'd won the golden ticket in Willy Wonka, I was so excited, because I didn't think I could get a doctor to agree to a hysterectomy because I was 38 at the time. And they're pretty conservative about you know, performing hysterectomy on someone my age. Somehow I got approved. And it was a pretty short amount of time that you know, it's category one on the list. And I a couple of weeks later it was out. 

Lainie  12:32  
So that's just like so between 21 and 38. You just suffered. I mean, let's let's talk about it, like you absolutely suffered. And did it still by yourself. It's just remarkable. So other women like particularly through my work as well, they you know, because they're just kind of pulling their hair out not knowing what to do. Did you ever look down the path of changing diet, doing all that sort of thing? homoeopathy, traditional Chinese medicine, all the all the alternative ways of kind of dealing with this in the pain or did it not even cross your radar that that could fix it or help manage it?

Belle  13:07  
It did a little bit I remember I did get acupuncture, which was somewhat helpful it gave made me feel buzzy, but it didn't heal the pain. And my diet is pretty good. Anyway, like  I'm vegetarian I tend to eat a lot of fresh, fresh fruit and veggies and stuff. There wasn't anything glaring in my diet that would suggest that there was a correlation between that and my endometriosis. And to me, it just, it really did feel that I needed something like a medical, like Western medicine, radical intervention that might make me feel good for a bit. Like clary sage oil, which is supposed to be good for you know, it might make me feel a little bit better. And I think that's important, but it wasn't going to heal the endometriosis.

Lainie  13:50  
So you suffered for freaking years.  c ould you and you've gone in,   talk us through the actual like surgery. What what did you have to do? Were you  nervous like, because there was risks? What are the risks?

Belle  14:04  
It was kind of funny, like I was really gung ho about the surgery like, oh, it's cheering, you know, I was like, yeah, it's just amazing. Yeah. And then I remember just as I was getting ready to go into the surgery, I was like, Oh, dear, I haven't got like a medical will or anything. So I said to my then partner, look, if anything happens, just pull the plug, pull the plug Then I had to sit in the waiting room for the operating thing. And you know, they put you in the funky gown and the funky hat and you just sort of sitting there waiting and the TV was on and the way it was a bunch of  women's magazines. I would say about an hour into the surgery or before the surgery. I was like I'm making a mistake. I'm supposed to have kids. This is a this is a mistake. This is a mistake. What made it kind of worse or not worse, but the surgeons were quite responsibly saying that we need you to verbalise that you understand that this so To remind you cannot have children, because they want you to go in knowingly and they want you consent. I was aware that that voice saying you're supposed to have to choose first to have kids was a little truth. But it wasn't the whole truth and the whole truth. And the bigger truth was that this was going to be a good thing to have this surgery and that I was just freaking out, then I remember walking into that room, because they make you walk in, they don't wheel you in. And that even felt like it had some symbolic weight to it. Because if you will, then it's sort of against a will. But if you're walking in, it's like something you're walking into. And the sort of a sense of agency with that, which is in some way, kind of terrifying. And all these people and robes and surgeon gowns are kind of looking at you. And you 're like, Hey, how you doing  and then yeah, the anesthesiologist, I don't know what you'd call it, put the thing and then I woke up.

Lainie  15:53  
 When you were freaking out? Did they sedate you with anything? So you could chill out? Or you completely compis mentis? Before you had to walk consensually in?

Belle  16:03  
I didn't share that I was freaking out. Okay.

Lainie  16:05  
Of course you didn't, 

Belle  16:07  
 They would have understandably be concerned. And

Lainie  16:10  
the great Ozzie battler didn't share that.

Belle  16:13  
And I knew myself well enough to know this is just a little blip in the system. You know, that's okay.

Lainie  16:19  
So you went in with a uterus that let you down all your life and you came out with nothing. 

Belle  16:25  
They kept my ovaries, but my cervix and my fallopian tubes and my uterus, we're gone.  

Lainie  16:31  
why did the keep your ovaries?

Belle  16:33  
they generally don't like to take out ovaries of women under 55. Because there's an increased risk of cardiac issues and also osteoporosis. And if they were to remove my ovaries, I would have to start hormonal replacement therapy, I think they thought, keep the ovaries in,  because I still have hormonal fluctuations each month, but I don't have menstrual periods.

Lainie  16:55  
Did you think of donating the remaining eggs to women that couldn't have babies?

Belle  17:00  
Because it's a big thing actually, in the states to donate x more. 

Lainie  17:05  
it's one of my massive regrets that I knew I wasn't gonna have kids. And I didn't know that at the time that that could have been a possibility. And I know you shouldn't have regrets in life. But I if I, if I would have known about that in my early 30s. Because I'd made my decision, I would have totally harvested eggs and given them to women.

Belle  17:23  
Anything I looked at in the states around that they wanted people under 25. 

Lainie  17:28  
All right, fair enough.

Belle  17:29  
 I think too, they they screens some of the screening questions too. For like, because you get paid like not, you know, you hope that you would do it for altruistic reasons. Not for the pay day, but you get paid like $8,000 or something. But it's a nightmare, because you have to take hormones and stuff. Yeah,

Lainie  17:46  
 How old are you now? Bell?

Belle  17:48  

Lainie  17:49  
Ahh so, this was only last year.

Belle  17:51  
Oh, maybe it was before. Hang on. .37 Sorry, fake news, fake news.

Lainie  17:59  
 So what during COVID? Like the start of that year that it all started?

Belle  18:01  
No, I got it done in 2019. September 2019. 

Lainie  18:16  
Oh, just before, just before the bugs. The bugs? Yes, I know this before the buggies came. Okay, so you're 39 now and how has your life changed Since?

Belle  18:29  
 where do we begin? I understand the surgery to be a miracle of sorts. Like I don't think it's a supernatural miracle. I think it was, you know, good surgery, good. Doctors, good whatever. However, it felt like a miracle like to be healed of this thing that I've had for that long that was causing me so much grief was like absolute. It's almost like I got a second chance in life. So

Lainie  18:51  
you've got no no pain now that just the hormonal fluctuations? Do you question why you waited so long? Why you tried it why you battled it out?

Belle  19:00  
Um, no. I I mean, for one,  I sort of don't have regrets, I think, well, I did make the best decisions I could at the time. And I did try and get help for it. But I think what prevents a lot of help for this is the idea that women want children, and you can't do anything too aggressive, because they might change their minds. So after the age of 35, they tend to sort of trust you a bit more when you're like, I'm not going to have children and also to there was a period in my sort of early 30s, where I was a bit on the fence and where I was like, are we going to have kids? Are we not going to have kids, yada yada yada. So the fact that potentially, you know, having children could come into the picture impacted the sort of treatment I was going to get because if I was to get say, endometrial ablation or even hysterectomy before that, well, that would be completely ruled out and I wasn't quite ready I think to take that step and say no I'm out  on that.

Lainie  19:56  
I need I need to ask you this because I think it's an important thing. For people listening to understand how has it affected your sex life? Having that? Has it affected your orgasms? Has it affected you? It's a very real Topic.

Belle  20:10  
It is a real Topic Yes! I will talk about that. Well, it's one of those things where correlation doesn't necessarily equal causation. Because, oh, God, I hope my mom doesn't listen to this. So I got a divorce during COVID. Let's just say that my recreational activities have shifted since then. And I may or may not have a different partner. And because of that, you know, I'm not sure if you would say, oh, it's because of the hysterectomy that or if it's other factors, shall we say? I think too, it's like, yes, there is much more orgasmic potential in me, I feel much more freer in my body, much more, I guess, comfortable having a vagina. Because I think before I had a lot of shame, and a lot of, I mean, maybe that has something to do with the endometriosis, maybe not. And I think too, when you get to your, like, 30s, it's a little bit like, Yeah, I'm gonna have a party because you're kind of much more comfortable in yourself, you're much more accepting of yourself. And I found that having the surgery just brought out all this life in me and like all this new I had so much more energy, I wanted to go out dancing, I wanted to do things add so much more kind of confidence in myself and trust in myself. So sort of has fed into, I guess, my sexuality as well and that I feel much freer and much more comfortable with, you know, pleasure in general and love in general and being embodied, as well. Um, like, almost as a spiritual practice. Now, every time I'd have to say this, every time I dance now, I always do a little gratitude dance for my surgeons, and my doctors and everybody, because it's like, this is possible. Because of that, because of that surgery. Like I remember once it was, I think it was like, would have been the date that like would have been the eighth of the month and it would have been the day would have had my period because I tracked it pretty religiously, and I was like, I would be in bed unable to move right now. And instead, I'm in Fitzroy, you know, having a boogie and an aesthetic dance thing. Like what a gift.

Lainie  22:06  
Okay, that's good to know. Because I think people that think about hysterectomy is Think I'm gonna lose my sex drive. So that that's good. If you've fallen in love with your life and yourself that also that your mind is, is not in that hole that I've lost something. But I've gained something that psychologically is a win anyway. Because you're telling yourself life is joyous,  not that you've lost something. Have you got any tips for women, possibly your age or younger, or even older that are going through this and contemplating or feeling the pain and not doing anything about it and contemplating hysterectomy, do you have any tips to share?

Belle  22:46  
I think there's, I guess two things I would say. And the first is I think it's helpful to develop a relationship with a GP. I mean, your professional relationship with the GP who will know you and they can walk you through the journey. Like I mentioned, the doctor I had in my teens, and I know I have absolutely fantastic GP now. And I think when they get to know you, you can kind of work on a treatment plan together. Maybe that will include Marina, I mean, there's much more options. Now. Endometriosis is much more discussed, we can thank Emma wiggle for that, because she's done a lot of advocacy work for endometriosis. And I think having the same GP I have found helpful. I remember somebody said to me, like, and I think they're quoting Maya Angelou, like go with yourself, you'll have a lot of voices, particularly if you're under 40. If you have any hysterectomy, about your life, and you know, not having kids if you don't have kids, or what, what it means but one of the reasons why I was actually motivated to speak on this podcast is to be like, my life is not a tragedy. Like I have really good things in my life. And I love kids, and I love pregnancy. And I love all of it. And I'm also quite okay, not having that as part of my life. And it's not a bad thing. But that's me. And I know myself and if you feel within yourself that this is something that would be cure, you know, cure you go for it. But you might get a bit of pushback from people, but fuck them. I mean, they're not they're not the ones suffering five days a month. Yeah.

Lainie  24:11  
And the very last wrap up question is, do you love your diagnosis? But as you say, it's not your diagnosis anymore? But are you glad that you experienced it? And how do you think that humbled you as a person dealing with something like that?

Belle  24:24  
I think I'm tougher than I look. And I can deal with a lot with a straight face. Because you know, I've had to go to work with excruciating pains and still be Hi, everybody, how are you and make water cooler chat. And even though I guess sort of the compartmentalization of you know, what I'm going through compared my external effect might be not ideal. In some circumstances. I think it's like, I kind of pride myself on someone who can show up and do the job.

Lainie  24:47  
But if you had your time again, your little Ozzie battler now moving forward, is suffering the best option for you or are you going to, you know, is this been a lesson to like actually, maybe look into something in the future. Instead of just like sitting in silence and having that whole I'm okay. mindset.

Belle  25:07  
Yes, definitely. And I think too it's taught me that you know, you can advocate you can advocate for yourself and be a bit of a pain in the ass sometimes because I was like I'm not taking Marina. I'm not. And usually I'm like you're the one with the medical degree I'll listen to you,  but I was like, Fuck no, I am not doing Marina. So don't be scared  I think it's good to be a bit of a bit of a pain sometimes.

Lainie  25:33  
Yea be a health Karen. Yeah, absolutely investigate, research. That's been the common theme for a lot of people that have spoken on this podcast, research and advocate. There was a meme I think I put up on my Instagram account. You're not a difficult patient If you self advocate. Is there anything you wanted to add to wrap up or I mean, it's been an incredible journey that we've we've put all your suffering into 30 minutes.

Belle  25:58  
I did think of another bit of advice for anyone who is considering hysterectomies.On Facebook, there's numerous groups for people having hysterectomy is and they are the most beautiful place on the internet. Like just imagine a supportive, gorgeous community of women cheering each other on we have a bad day that help you do you think answer your questions. And it's a really, like, it's the internet at its best,

Lainie  26:25  
you can send me the link and I'll put it in the podcast note.

Belle  26:28  
Yes, I'll find the ones that I was on. And it actually kind of made me think about the internet a little bit differently, because it is really some really beautiful people who help you through the decision making if you just need to chat about it.

Lainie  26:43  
That's brilliant for anyone that's looking for support. I'll put the link in the podcast notes. And and yeah, thank you, darling, thank you so much. It's really good to know a little bit more about your story and see  See the joy in your face when you're talking about if you're not suffering anymore? My goodness.

Belle  27:00  
Yeah, it's really something like sometimes I feel like you know how you turn on TV at 4 am and there's  those dodgy televangelism "Yeah I'm healed, Yeah yeah" I do feel like that sometimes.

Lainie  27:10  
Amen Sista. All right. Well, thanks again.

Belle  27:13  
Thank you.